Knowing and yet not knowing

It’s Ali again. I was trying to figure out how to get it so I won’t be a TLC guest anymore and all the posts will show up under my name but I couldn’t figure it out, alas my horrible computer skills.
Life is so confusing for me right now, and I need to write somewhere. I feel like no one has ever been where I am, no one has ever gone through this.
So, question… Has anybody ever known what their diagnosis is going to be, even before the testing?
I’ve been undiagnosed for 4 years, and 6 days ago everything finally clicked, and I knew. I knew without a doubt what my diagnosis was going to be, what area of the body my mysterious monster was located in.
Has anybody ever experienced that before? I’m finding it’s really tough – to know and yet not know. I know what it is, yet i don’t have a diagnosis. it’s like I’m stuck in between two places, between the actual diagnosis and the whirlwind that comes along with treatment and whatever, and the not knowing. It’s crazy.
Maybe this doesn’t make any sense, my thoughts don’t really make sense anymore. I just feel so alone today, and I want to know if anybody is out there who knows what I’m talking about (and doesn’t think I’m crazy!)

July 15, 2012 by  
Filed under Coping with Cancer

  • Leah Shearer

    Hi Ali,

    No one thinks you’re crazy. To be honest…it’s the situations that are crazy. It’s just feels crazy as you try to adapt to all the swirling chaos of life in these serious medical situations. Make sense?

    At least this is my explanation for it. I have seen it happen over and over again so just know you are not alone. And in my own situation I dealt with it myself…I think it might be crazy if you didn’t feel turned upside down.

    And yes, I, myself had a sense of what the diagnosis was before it was officially announced. Is that what you meant?

    Anyone else have a similar experience?

    And Ali, as for your other question—have you tried logging on through Facebook– that is if you have an account…

    Leah Shearer
    TLC Program Coordinator
    Rochester, NY

    • cass

      hey ali,
      my name is cass and i was wondering if i could maybe have ur email, ur story really touches my life and id like to know more about u
      thank u

  • Bryn Thomson Mugnolo

    Hey Ali. I think I know exactly what you mean about knowing what was wrong with you before being diagnosed. I always thought I would have cancer, for some reason, and it terrified me. When I was twelve, I felt a lump on my neck one night, among the other signs I had been experiencing- though I didn’t realize the significance at the time. When I felt that lump, I just knew. I tried to talk myself out of it, and tell myself that I was jumping to conclusions. But I was right. And the scariest part is between awareness and diagnosis- you know there’s something wrong, but you don’t yet understand, or have a plan of action. This is crucial:

    Find out your plan of action. Find out everything you can about your sickness, and everything you can about what you can do. It will feel so much better just to KNOW. That’s what I experienced- I could deal with the fear of treatment, but I couldn’t stand not knowing. So help yourself by finding out.

    If you ever want to talk, send me an email at I’d love to help out if I can. From Bryn.

  • ricky
  • Megan

    That is exactly what happened to me. I have stage 4 lung cancer. And when I went to the hospital to find out it was because I had fluid in my lung. But the doctors said I had been living with it for 4 years! I can’t believe it, because I have a 2 year old daughter and I made it through pregnancy and birth healthy for her. But I ALWAYS KNEW there was something wrong. And doctors always diagnosed me with chronic lower back pain and thats it…

  • Megan

    And get yourself as educated as you can about your cancer as fast as you can. If I can give you a piece of advice, it is that you are the best doctor for your body. You need to make every decision about your body that you can no matter what. Be involved in your healthcare like a nut. Don’t leave a doctors office unless you feel safe and comfortable about your body and whats going on, because its the doctors’ job to do everything they can to keep you happy and healthy.

  • Maggie

    Hey Ali,
    Omg that is exactly how I’ve been feeling for the past few months. And it’s been really getting to me. It’s nice to know I’m not the only one who thinks like that. If you want anyone to talk to you could email me. It would be nice to have someone I can vent to.

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